Questions/Comments and a little venting too.

[solecleansing]

My surgery was on November 8th, 2007 in Raleigh, NC. 

I feel very fortunate that I was awarded social secuity disability benefits on the first try. It was a long an difficult process but I am glad I stuck with it. I have loss of hearing on the left side and balance issues - somedays I walk like a drunken sailor.  I also have fibromyalgia and depression.  I had to move from Raleigh to Connecticut to stay with a friend because I could not affort to live alone. 

Does anyone also have fibromyalgia?  If so, what do you do for pain relief?

Are there any support groups in Connecticut?

Any suggestions on hearing devices would be appreciated.  I have a very difficult time hearing when in crowded situation.

I have been going to physical therapy for the balance issues without much success. 

I miss working.

Thanks for listening and I appreciate being part of such a great group.

[Kaybo]

HI!
I don't not have any answers for you, but I know that several others can help you out!!  Jim Scott, aren't you in CT?  Phyl, where are you??
Hang in there!

K

[Socks001]

I found trying to get as much exercise as possible really helped with teh fibromyalgia... and I had severe balance problems and headaches too...
It was almost 5 years before I could honestly say that the balance issues were no longer a problem... all of a sudden I realised that I could walk in a straight line and turn around without holding on... at 6 months I needed help walking everywhere in the open and I could stagger around in enclosed spaces...
Exercise has always been the only thing that helps with the fibromyalgia pain and I was able to go gently on the elliptical stepper and the recumbent bike from about 2 months...
I was an idiot and went back to work after 3 months, was far too tired to make it through a day and couldn't even get around my building properly but people were very supportive... at 7 months I was really falling apart and they insisted I go off work again for another month... which was a very sensible thing to do...
Physical therapy was never offered and it really was a case of just getting on with it and learning to deal with it... I had a very supportive boyfriend (now husband) who really helped me with everything...
I promise...
Things will get better...
This was in some ways the worst time for me ... at around 6 months post op as I had thought I shoudl be back to normal and I was having difficulty coming to terms with the changes... but it will get better... just keep fighting it...
Good luck...

[leapyrtwins]

Sole -

I'm thinking there are others on this board with fibromyalgia and with MS, too - but I could be mistaken.  Did you try a search on "fibromyaliga"?

If there is a support group in CT, it would be listed on the main page of this website under "support" - something about local chapters.  Or you can email the ANA and they will let you know.

As far as the hearing goes, I have a BAHA - got the implant on 3/4/08 and the processor on 6/4/08 - and absolutely love it!  One of my latest BAHA topics is under the hearing section and is called "Jan's BAHA pictures", there is also another called "Can you hear me now?".  If you search under "BAHA" you will find numerous posts by lots of members, not just me    The Transear is also an option and you will find lots of posts here also; just search under "Transear".

As for the whining, don't ever hesitate to do so.  It's one of the reasons we're all here and it's perfectly acceptable.  We also sometimes call it "venting" 

Jan

[solecleansing]

Hi Jan,  You were right, venting is more what I had in mind - so I changed the subject line.  Thanks.

[survivor]

Hi Solecleansing, I'm a newbie, but I just have to tell you about my 17 channel behind the ear hearing aid. You can't even see it and the background noise is muffled. My crossover plugged into both ears and had a wire that ran under your hair .     I  used it for 10 years hearing on my left side where AN surgery was. I prefer this one because both ears are not plugged and my balance is not all that great.  Good Luck,      from survivor                                                                                                                                                                       

[claire1]

Hi Solecleansing

I have fibromyalgia and have recently started on lyrica(leerica)which has helped immensly.  I also try to get as much exersizing as I can. I have balance issues so it tends to make exercising a bit difficult so I do Isometrics as a way of getting the benifits of exercizing without breaking a sweat or a leg.(dizziness)

Not sure where in CT. you'll be moving but in Springfield,massachusetts there's a vestibular therapist that's one of the best in New England. His name is Jim Brinds. Hopefully he's still in spfld,mass.
I wish you the best and welcome to the boards.
Claire

[Omaschwannoma]

I do know there are exercises in the "Balance" booklet that ANA puts out.  So for anyone having difficulties with their vertigo/dizziness going back to those exercises specific to this problem is a good idea.  It helps me to do them at least 3 x's week, plus it doesn't take much time either so no big deal. 

Also wanted to add at our last ANA support group meeting we had a doctor there talking about balance/dizziness issues and how doctors are now changing their thinking about treatments to help correct this problem as it seems to be a bigger issue for post surgical and post radiation patients.  Finally, doctors are now taking us more seriously regarding post treatment problems.  Seems they have decided to "look outside the box".  The procedure talked about at the meeting was "gentamycin" treatments. 

I recently, February 2008, had surgery (labyrinthectomy) to help with problem of oscillopsia, inflammation of inner ear, and to remove any and all organs having to do with balance.  My procedure albeit radical worked and for that I'm very happy! 

[Jim Scott]

Solecleansing:

Sorry I missed this post for awhile. 

My wife has suffered with fibromyalgia for15 years.  She has used Neurontin (Gabapentin) for pain for most of that time.  It has been fairly effective - but not a panacea.  She recently tried Lyrica for pain (under her doctor's supervision, of course) but found it had no discernible effect for her (and costs more) so she is going back to the Neurontin.  The doctor my wife sees for most of her fibromyalgia issues is a rheumatologist and he prescribed the Lyrica, which has been efficacious for some of his patients.

Hartford is listed as having an Acoustic Neuroma support group but I haven't been a part of that group (I live some 35 miles from Hartford) so I don't know if it remains active and where and when they meet, etc.  As Jan suggested, contacting the ANA will give you that information.  I hope you'll do that.

I'm pleased to learn that you were awarded SS benefits on your first try, but I'm sure you would rather be able to work.  However, at least you have some income, even if less than you probably could use.

I have the SSD but chose not to use a hearing aid.  I know that BAHA (Bone Anchored Hearing Aid) units are implantable and quite popular with many AN patients because they work.  Be warned that they are fairly expensive and insurance does not always cover the full cost.  However, it's certainly worth looking into if you feel you could benefit from such a device. 

I would encourage you to continue with the PT for your balance problems.  It takes time and hard work but they generally pay off.  Patience is critical to a complete recovery and certainly is helpful on those days when you feel as if you've plateaued. 

As we often say: 'it gets better'. I like to add: 'really'     

I hope this forum helps you in some small way.  Feel free to vent whenever you need to, knowing that we can empathize.

Jim